Policy Report | December 2015
Disability Policy Consortium
Boston, Massachusetts
What people with disabilities really want
from the healthcare system: Results from
small group conversations with
individuals with disabilities Regarding
How to Improve Access to Care
ACKNOWLEDGEMENTS
This report was prepared by DPC’s staff, Maggie Sheets, under the direction of Dennis
Heaphy.
This report was made possible by the Blue Cross Blue Shield Foundation of
Massachusetts. We would also like to thank and acknowledge the 37 individuals with
disabilities from five different demographic groups who participated in conversations
with DPC.
DPC is appreciative of the following organizations, and individuals, for their help in
recruiting individuals for the five demographic groups and for providing input into the
recommendations contained in this report:
 The Boston Center for Independent Living (Allegra Stout);
 The Boston Health Care for the Homeless (Casey León and Lena Julia Cardoso);
 The Community Catalyst (Marcia Hams and Emily Polak); Deaf Inc. (Carol
Hilbinger and Matthew Kelley);
 Amy Kalogeropoulos, Colin Killick and Kimberley Warsett from the DPC
 The Massachusetts Department of Public Health (Rachel Tanenhouse);
 The Massachusetts General Hospital (Zary Amirhosseini, Gregg Clapham, Devon
Punch);
 Simmons College (Carly Burton-Formerly from MassEquality);
 Massachusetts Transgender Political Coalition (Mason Dunn);
 The Metro Boston Recovery Learning Community Solomon Carter Fuller MHC
(Paul Styczko); and
 Trinity Church Boston, (Rev. William Rich).
Thanks also to consultants, Ellen Breslin, Health Management Associates and Tony
Dreyfus, Independent Consultant for their contributions to this report.
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ABOUT THE DISABILITY POLICY CONSORTIUM
The Disability Policy Consortium (DPC) is a cross-disability advocacy and
research non-profit organization. The DPC began nineteen years ago with a
small group of advocates. Today, DPC is a non-profit with 14 employees and
annual budget of more than $650,000.
The DPC gives a political voice to people with disabilities in the
Commonwealth. The Consortium believes that people with all types of
disabilities need to come together under a common agenda and ensure that the
disability community as a whole has a seat at the table when legislation,
policies, and regulations that affect their lives are developed. DPC also plays a
critical role by conducting research and collaborating with other institutions and
organizations to ensure that research and policy are influenced by persons with
disabilities,
Specifically, the DPC has moved beyond the premise of “Nothing about Us,
without Us” to a new place that supports “About Us, By Us.” The DPC
recognizes that the disability community still lacks research institutions and
organizations governed and led by people with disabilities. Now, with the directive
“About Us, By Us,” the DPC is filling that gap.
PROJECT PURPOSE
The purpose of this project is to find out how persons with disabilities experience the
health care system and to enrich our understanding of the public view that having a
disability means living outside social norms.
This project brings forth the specific challenges, barriers, and stereotypes that persons
with disabilities experience, with consideration to the demographic group that they
participated in. The five groups were constructed around persons with disabilities who
are also: (1) persons with mental health needs and/or addiction; (2) persons who are Deaf
and/or Hard of Hearing; (3) persons who are lesbian; (4) persons who are gay; and (5)
and persons who are experiencing homelessness.
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This report serves as a small example of how this type of work is needed within the
United States to bring forth the values of consumers with disabilities more completely
into the definition and evaluation of quality.
There is much support for the need for this type of research approach. For example, the
National Council on Disability reported in 2009 that “…disability and health research
appears to be poorly integrated into overall health disparities and health promotion
research.” (1) In a 2012 review of quality measurements, the Agency for Healthcare
Research and Quality found that the majority of more than 15,500 studies focused on the
initiation of interventions rather than the quality of the interventions. The review
concluded that a multipronged approach is needed to truly gain the perspective of people
with disabilities in measuring healthcare quality – an approach involving the
collaboration of “…measurement efforts across medical interventions, rehabilitation, and
social support provision.” (2)
Based on the key insights shared by persons with disabilities, the DPC concludes that a
multi-faceted approach is critical in order to address the complex needs of all
populations.
FINDINGS
The DPC has intentionally simplified the key insights of this report to ensure that the
voices of persons with disabilities are heard. Across all five different demographic
groups, the DPC heard individuals say that:
 Persons with disabilities face discriminatory attitudes from health care providers.
 Communication problems hinder an individual’s access to care and treatment.
 Doctors are not fully sensitive to the needs of people with disabilities.
 Being pro-active can make a critical difference to receiving appropriate access.
PROJECT DESIGN: FIVE GROUPS, FIVE CONVERSATIONS
The DPC conducted five small group interviews with different groups of people with
disabilities and engaged them in discussions. These groups were made up of individuals
who self-identified as being part of one of the following five demographic groups and
were thus assigned to be part of one of the five group interviews. These groups were
made up of:
 People who are experiencing homelessness
 People with mental health needs and/or addiction
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 People who are deaf or hard of hearing
 Gay men
 Lesbians
These group interviews were held in February and March of 2015. Each group met for
90 minutes. A DPC staff member worked with other organizations to recruit
participants, who each received a $50 gift card as incentive to participate. Working with
a consultant, the DPC developed questions to guide the discussions, which were
recorded and transcribed. These questions are provided in Appendix B of this report.
The group interviews were qualitative, not quantitative, to give MassHealth enrollees
with disabilities whose voices may not be routinely heard, the opportunity to speak in
some depth about their experiences and opinions.
The participants provided great depth of insight into the range of concerns for people
with disabilities. (The numbers of participants for each group can be found in Figure 1)
These insights will serve as the foundation for future, more quantitative studies.
Figure 1
FIVE DEMOGRAPHIC GROUPS
Persons with Disabilities Participated in One of Five Groups.
Group 1:
Group 2:
Group 3:
Mental Health
Deaf or Hard
Lesbian
Needs and/or
of Hearing
(n = 3)
Addictions (n=11)
(n = 7)
Male
5
3
Female 6
4
Total
11
7
3
Group 4:
Gay
(n =3)
Group 5:
Homeless
(n = 13)
3
9
4
13
Total
(n = 37)
37
The DPC worked with other organizations to recruit participants for these conversations.
The conversations with each group ran 90 minutes. Participants received a $50 gift card
as an incentive to participate.
Conversations with the five groups were structured around a set of qualitative questions
to give participants with disabilities, whose voices may not be routinely heard, the
opportunity to speak in some depth about their experiences and opinions. DPC recorded
and transcribed the conversations. The questions asked of participants to facilitate
discussion are provided in Appendix A of this report.
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EVIDENCE FROM THE LITERATURE
Certain groups of persons experience poorer health outcomes than their peers in the
general population. (3) (4) (5)
Some of the major barriers to obtaining adequate care exist in the following areas. For
individuals who:
 Deaf or hard of hearing: Well-trained sign language interpreters are often
unavailable to people who are deaf or hard of hearing, either because providers do not
want to incur the cost of paying the interpreters, or there is simply a shortage of
qualified interpreters. (6) (7)
 Are part of the LGBT community: Individuals in the LGBT community may not
disclose their sexuality, in part due to fear that they will receive poorer treatment,
even if such disclosure may be important for their care.(8) (9)
 Are Experiencing Homelessness: Receiving primary care in a way that is tailored to
the specific needs of a population, especially for individuals who are experiencing
homelessness, fosters greater trust in the doctor-patient relationship and a higher
standard of care. (10) Doctors are sometimes less trusting of non-white individuals who
were experiencing homelessness regarding their drug usage. This mistrust can lead
doctors to provide poorer care to such individuals. (11)
 Have mental health needs and/or addictions: As long as individuals with mental
health needs and/or addictions are treated by doctors whom they trust and feel they
can confide, a good standard of care is maintained. (12) (13)
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KEY INSIGHTS FROM THE PARTICIPANTS
Discrimination faced by people with disabilities in accessing care
Participants in our discussion group experienced discrimination
in their interactions with healthcare administrative staff and
health care professionals.
Individuals with mental health needs and/or addictions and those
who were experiencing homelessness, reported that they often feel
disrespected by health care staff, and unwelcome in hospitals and
clinics. Participants described the disrespectful treatment as so
frequent, widespread, and humiliating that it compromises access
to care significantly and discourages doctor-patient interaction
entirely. Such discrimination means that many opportunities for
addressing health and substance abuse issues are lost.
Many participants, particularly those with mental health needs
and/or addictions and those who were experiencing homelessness,
felt that the care they usually received was given only to increase
the incomes of health care providers. Specifically, participants
cited short physician visits, which led to incomplete treatment of
problems and to more frequent visits. However, participants said
that they experienced these issues less frequently, when greater
continuity of relationships with physicians, nurses and therapists
was present. Such strong relationships were reported to facilitate
communication about personal issues, such as mental health needs
and/or addictions, experiences of homelessness, and sexuality, all
of which can affect care.
Communication problems
Participants reported communication issues with
MassHealth and their providers, which hindered access to
appropriate care.
Participants across all five group discussions praised the primary
and specialist care that MassHealth helps them to access.
However, many participants still criticized the complexity of
obtaining insurance benefits. More specifically, participants
described how hard it is to communicate with MassHealth
particularly by phone, to learn about the services that are
available, how to obtain them, and how to troubleshoot
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“When I first walked in the
office they were really kind,
they were open....the minute
they found out that I was in
a methadone clinic they left
me in the room. They never
came back. They never even
gave me my ultrasound
pictures ...I left there
bawling my eyes out and I
refuse to go back.” –
Participant with mental
health needs and/or
addictions
There’s one part of the
hospital I go to, and they are
just awesome about
communicating via e-mail.
And I went to another part
of the hospital, and
requested that they e-mail
me, they say no, they
couldn’t do it and I am
totally deaf, I need e-mail to
contact you, how can I
discuss things? I really felt
like my rights were
violated.” Deaf/hard of
hearing Participant
enrollment issues. These difficulties were faulted for causing
delays in needed care and for creating barriers to obtaining
needed medications.
Communication difficulties were reportedly most acute for
members who are deaf or hard of hearing, whose access and
quality of care was directly related to the availability of
interpreter services at hospitals and physician offices which
they felt was often lacking or deficient.
Participants who were deaf or hard of hearing reported that
the difficulty of arranging interpreters reduced their effective
access to primary care, urgent care and hospital care.
Although they described that alternative means of
communication, such as lip-reading or video-relayed
interpretation, were available, all participants saw these
means as poor substitutes for an in-person interpreter. Deaf
or hard of hearing individuals felt the lack of an in-person
interpreter significantly lowered the standard of care that
they received from their provider.
Importance of positive patient-provider relationships
Participants reported that having a positive relationship
with their provider was critical to both access and
outcomes.
Many participants, most notably those who were either gay
men or lesbians, spoke positively about their health care
experiences. Gay men, for example, described that attitudes
among clinicians towards them, as members of the Lesbian
Gay Bisexual Transgender (LGBT) community, have been
generally accepting and positive. Such participants felt that
these positive attitudes made the difference in being able to
maintain a fairly good standard of care.
On the other hand, DPC also recorded dissatisfaction with
their care among participants who were lesbian because of
insensitive treatment by health care staff. This treatment
included failure to adapt procedures and exams to the
physical and emotional needs of women with disabilities
and inadequate recognition of pain caused by exams such
as vaginal exams or mammograms.
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“I don’t think they [doctors]
know how much it hurts to be
told or admonished that
you’re not using birth control
– to be told “don’t you
remember all the pain you
had [as a child] and why
would you ever [have
children]? Because there’s
genetically a 50% chance [of
passing my disability]. But
what [doctors] don’t realize is
you’re making it seem like I
have a horrible life …. And,
that deeply, deeply hurts…”Lesbian participant
These participants also reported being subjected to misguided
discussion of reproductive issues, including providers who placed
inappropriate emphasis on birth control for women and carried on
insensitive discussions about hereditary disability. Some participants
stated that such poor treatment led them at times to the decision to
forgo exams and screenings.
The importance of proactivity in patient-provider relationships
Participants credited being proactive and developing self-advocacy
skills to successful interaction with providers.
Many participants found that being proactive was key to removing
barriers to access to their healthcare services. For example, gay men
who participated in our discussion group felt that their doctors did
not seem sufficiently informed about their medical histories or the
potential side effects of medications. This led one participant to
experience very negative side effects from the Medicaid prescribed
by his doctor. To this participant, the doctor seemed unaware that
the medication could cause such adverse symptoms. This
participant was finally able to tell his dentist about his symptoms
and was taken off the medication, learning from this experience that
much more is needed by way of training for providers to save others
from this wholly negative experience.
Similarly, individuals who were experiencing homelessness, who
had mental health needs and/or addictions, or who were deaf or
hard of hearing, all felt that having the assistance of healthcare staff
or patient advocates strengthened their position. On multiple
occasions, participants in these groups related stories which
described how, with the aid of a patient advocate or nurse, they
were able to have their needs addressed and obtained the care they
needed.
In general, all participants felt that being pro-active – and equipped
with self-advocacy skills – promised better care and treatment.
Participants were able to take action, including changing physicians,
and receive the services that they needed.
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“The problem I’ve had with
doctors is I find they don’t
take side effects seriously from
medication and I believe I’ve
been caused health problems
by some of these side effects.
Some have increased my
appetite where I gained a lot
of weight. I’ve got diabetes.
I’ve been in pain for two
years….. I just discovered that
it was caused by medication
and none of these doctors
knew.” Gay male participant
“I got a nurse that…came
and took good care of me, and
she said “Tell me the truth.”
She said “Do you have a
place to live?” and I said
“Yeah,” because I knew I was
going to get better care.”Participant in homeless
group.
RECOMMENDATIONS, BASED ON KEY INSIGHTS
Based on the key insights, DPC developed a short list of recommendations to improve
how members experience the health care system. It is the intent of DPC that these
recommendations also support the efforts of advocacy organizations. We also hope that
these recommendations can be used strengthen the capabilities of MassHealth and its
contracted health plans to address the needs of all persons with disabilities. The
recommendations summarized in Figure 2 below are common to all five groups.
Figure 2
Recommendation
Recommendation 1:
Recommendation 2:
Recommendation 3:
Recommendation 4:
Description
Providers must listen more. Healthcare providers and staff
need to listen more attentively, as part of broader efforts to
provide the access and continuity of care essential to
achieving quality and efficiency.
MassHealth must expand support. MassHealth needs to
expand resources to support members to respond to
members’ inquiries by phone, and to offer more intensive
support for members with high levels of need or
compromised ability to manage care.
Patient-provider interactions need to be longer. Patientprovider interactions are often too short to fully address the
problems and concerns of the member.
Healthcare staff need more training. Healthcare
practitioners and support staff need more education to
encourage attentive, respectful and compassionate treatment
of members. Policymakers and payer should determine how
best to incentivize improved treatment and develop a system
to monitor such improvements accordingly.
In addition to these recommendations, DPC developed a set of recommendations to
improve the experience of persons with disabilities that are specific to the issues raised by
participants in each group. These recommendations are provided in Appendix B.
LIMITATIONS
The insights and recommendations offered in this report are based on a small number of
participants, most notably among lesbians and gay men. Furthermore, although recruiting
efforts sought individuals who identified as being bisexual or transgender, none of the
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participants actively identified as such. Our results are also limited by the fact that we
only included people with certain disabilities in our interview populations. Despite the
fact that our conversations involved only a small number of individuals with certain
disabilities, meaning that our results are not generalizable to the wider population of
individuals with disabilities, our results provide valuable qualitative data. The value in
these data lies in the fact that there is so little research concerning the healthcare needs
and preferences of the populations we spoke to. It is hoped that the information we have
found will serve as the basis for potential future research addressing the limitations
described above. ISABILITY
NEXT STEPS
This report presents evidence that the persons with disabilities in our target population
groups still experience significant barriers to care. The information offered demonstrates
that more work is needed to find new and innovative ways to adequately address these
issues.
The DPC recommends five areas for further research in an effort to help to improve how
MassHealth and providers address the health care needs of persons with disabilities.
These areas can be found in Figure 3.
Figure 3
Area
Research Area 1
Research Area 2
Research Area 3
Research Area 4
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Description
Persons with disabilities need help in handling the complexity
of dealing with the wide range of MassHealth benefits. Further
research is needed to identify and/or create the methods to help
consumers handle the complexity of dealing with wide range of
MassHealth benefits.
Persons with disabilities need access to MassHealth staff who
are capable of responding to their inquiries. Further research is
needed to identify and/or create the methods to increase
Medicaid’s budget for sufficient staff to respond to inquiries.
Persons with cognitive and emotional challenges can find it
harder to learn about and to satisfy MassHealth administrative
requirements. Further research is needed to identify changes
that can improve the ease with which persons with cognitive
and emotional challenges can learn about and satisfy
MassHealth administrative requirements.
Persons with disabilities enrolled in the Primary Care Clinician
(PCC) Plan receive their behavioral health care from
MassHealth’s Behavioral Health contractor. The current
structure makes it hard for many members, who lack a single
Research Area 5
POLICY CONSORTIUM
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site for problem solving. Further research is needed to
understand the complications that members face and how to
reduce the complications.
Our results show that more data collection and analysis is
needed to learn more from the experiences of other diverse
groups whose conditions and needs are different from those of
the general population – including people with renal failure,
cognitive disability, AIDS, visual impairments, and respiratory
conditions. Further research is needed to better understand the
health care experiences of all groups.
REPORT APPENDICES
Appendix A: Interview Questions
Appendix B: Recommendations for Each Demographic Group
Appendix C: Sampling of Participants’ Experiences and Opinions
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Appendix A. Interview Questions
ALL GROUPS:
1. We hoped you might have been able to think about your own experiences with health care (with
doctors, nurses, in offices or clinics, in hospitals) that might be useful for understanding issues of
access for people [XYZ]. Did anyone think of something that you’d be willing to share?
[XYZ stands for]:
who are deaf or hard of hearing
with disabilities who are gay
with disabilities who are lesbian
with disabilities who are homeless
with substance abuse issues]
2. Do you believe that people (XYZ) have special problems in getting good access to health care? How
serious are these challenges?
3. [Possible follow-up questions to elicit more detail:] What are the most common things about the
programs and services you have experienced that make it hard for people (XYZ) to get good access to
care? What are some other specific problems that people (XYZ) might be worried about as they try to
get good health care?
4. Do you see problems
With what kinds of services that MassHealth covers?
With the distances people must travel to get services?
With the time needed to get urgent care, or appointments for primary or specialty care?
5. What are the some of the things that you would most like to see changed for people to get better access
to health care? What do you think might be the single most important change that could be made in
health services to improve access to care for people who are [XYZ]?
6. What are the most successful things (programs, strategies, techniques, services) that you have
experienced or heard about that help people [XYZ] get good access to health care?
7. One issue we’re eager to hear your opinions about is how much you would like the fact that you are
[XYZ] to be addressed in your health care. Some people might like this part of themselves not to
become an issue in their health care. Others might like this part of themselves to be addressed or
incorporated as a consideration in their health care. What do you think? Would you prefer that doctors
and others in health care relate to you as much as possible just as they do to all other patients? Or
would you prefer that they usually take into consideration that you are a person [XYZ]?
In what situations might special consideration be better? In what situations would it be better to be
treated just the same?
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8. A related issue is how much doctors and others are focusing on the immediate problems that bring
you to the doctor’s office clinic or hospital, and how much they are considering your health as a
whole person. Other aspects of your life that could affect your health might include your personal
relationships, housing, sexual or reproductive health, substances use. Some people might like their
health care to focus mostly on the problems that bring them into care, others might like their health
care to take into consideration some of these other parts of their lives.
What have you experienced? Are doctors, nurses and other health care staff focused mostly on your
symptoms, illnesses or disabilities? Are they asking you questions about your emotional health, and
about relationships with family members, friends and partners? About your housing? About sexual
health? About tobacco, alcohol and use of other substances?
What do you think? In what circumstances would you prefer attention focused closely on the
immediate problems that bring you to care? In what circumstances would you prefer attention to
other elements of your life that may be affecting your health?
EACH GROUP:
For people with substance abuse issues
1. How do substance abuse issues affect your experiences with your doctor?
2. In what situations is it important to share information about substance use? When is it important
to not share such information?
For people who are deaf or hard of hearing:
1. What are some things health care providers should understand about deaf culture? How do these
things affect your access to health care?
2. How would you like issues about deaf culture and access to health care to be studied in the
future? How important is it that people who are deaf conduct future work in this area?
For people with disabilities who are lesbian
1. How is a person’s health care affected by both having a disability and being lesbian?
2. In what situations does lesbian identity need to be considered or discussed as part of a patient’s
health status and social relations?
3. In what situations might people with disabilities prefer to maintain privacy about lesbian identity?
For people with disabilities who are gay
1. How is a person’s health care affected by both having a disability and being gay?
2. In what situations does gay identity need to be considered or discussed as part of a patient’s
health status and social relations?
3. In what situations might people with disabilities prefer to maintain privacy about gay identity?
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For people with disabilities who are homeless
1. How are people with disabilities who are homeless getting health care?
2. How do people’s homelessness affect their treatment by their doctors?
3. What services are people not getting because they are homeless?
4. What can doctors, nurses, hospitals and others do to better help people with disabilities who are
homeless?
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Appendix B. Recommendations for Each Demographic Group
To Improve Access for Individuals with Mental health Needs and/or Addictions:
 People with mental health needs and/or addictions should:
o Be allowed to choose the frequency of doctor visits, irrespective of insurance.
o Be able to have easier access to whole-person-centered care.
o Be allowed to accept or deny tests or procedures that are recommended to them.
o Not be coerced into courses of treatment.
 Insurers and MassHealth need to increase the amount of mental health providers available for
individuals with mental health needs and/or addictions, to ensure that continuity of care is
maintained. Doctor and patient collaboration should be further encouraged to ensure that the best
course of treatment is decided on, based on input from both parties.
 More investment should be placed into community-based services, particularly peer services.
 Increased action should be taken to ensure that individuals with mental health needs and/or
addictions fully understand why they were recommended to have certain tests or procedures, and
their side effects.
 Continuity of care should be paramount to ensure the best quality of services for the population.
 More should be done to train providers to be more sensitive to the needs of people with mental
health needs and/or addictions and take steps to ensure that treatment that is given to these patients
is of the same quality as treatment that is given to all other patients.
 In training providers, providers should understand that there are valid reasons for “non-compliance”
and should not dismiss patients for simply presenting another perspective.
 A referral system should be put in place that assures a smooth, seamless transition from one care
provider to another.
 An increased number of patient advocates should be made available in hospitals and health centers
to help people navigate the healthcare system and ensure their healthcare needs are met.
 Group homes should emphasize independence and recovery principles for all residents.
 Councils made up predominantly of peers could oversee group homes to ensure that they are
addressing the needs of people with mental health needs and/or addictions.
 Insurance plans should establish better communication systems with enrollees so that enrollees
understand their coverage and who to contact with questions.
Recommendations to Improve Access for Deaf and Hard of hearing individuals
 MassHealth should initiate a thorough examination of the availability of interpretive services for
deaf and hard-of-hearing beneficiaries in hospitals and physician offices.
 MassHealth should also consider requirements and standards for health care providers to
communicate with deaf and hard-of-hearing patients by email.
 MassHealth should also transform its reluctant attitude toward flexibility in communicating with
beneficiaries by email, and become a model for accommodating the communication needs of its
deaf and hard-of-hearing beneficiaries.
To Improve Access for Individuals in the LGBT Community
 More patient advocates must be made available to help people navigate the healthcare system.
 Healthcare practitioners need to be more sensitive to the needs of women with disabilities,
especially in discussions related to reproductive health.
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 A system for requesting reasonable accommodations, especially in terms of devices used in disease
screenings is needed, and the amount of equipment in hospitals should be monitored to ensure they
are readily available for patients.
 Greater self-advocacy skills should be fostered in patients through open discussions with healthcare
providers about their needs and preferences.
 More should be done to educate doctors about cultural competency to increase their sensitivity.
Recommendations to Improve Access for Individuals experiencing homelessness
 Boston Health Care for the Homeless Program (BHCHP) should be considered more closely as a
model that other institutions should follow in their efforts to treat people who are homeless.
 Further expansion of substance abuse programs should include more individuals since, as
described in the DPC’s group interviews, these programs can achieve very positive results.
 Methods to encourage patient and provider communication should continue to be encouraged in
establishing courses of treatment for homeless individuals.
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Appendix C. Sampling of Participants’ Experiences and Opinions
From participants with mental health needs and/or addictions:
“When I first walked in the office they were really kind, they were open. Oh, they were all excited for me.
The doctor came in and we had this whole conversation, this and that. But then they had me do a urine
[test] which came out positive for methadone. Their whole attitude toward me changed. Their whole
treatment changed....The minute they found out that I was in a methadone clinic they left me in the room.
They never came back. They never even gave me my ultrasound pictures and like an hour and a half later
me and my daughter’s father were sitting’ in there, like what is going on? So finally he had to wipe the
jelly stuff off my belly because they never even came in to clean me up and we went out front and were
like “well what’s going on?” They’re like “oh your appointment’s been done.” And I’m like “well
shouldn’t someone have come in and told me that my appointment’s done? Where’s my ultrasound
pictures?” ...I left there bawling my eyes out and I refuse to go back.”
“Doctors, nurses they all pass the buck. Nobody really wants to do their job anymore… especially if
you’re on Medicaid, MassHealth, anything that’s through the government, we’re all labeled the same.”
From participants who are deaf or hard of hearing:
“There’s one part of the hospital I go to, and they are just awesome about communicating via e-mail. And
I went to another part of the hospital, and requested that they e-mail me, they say no, they couldn’t do it
and I persisted, I persisted. I am totally deaf, I need e-mail to contact you; how can I discuss things? I
really felt like my rights were violated.”
“After being laid off from work I went on MassHealth. I made an appointment with the doctor…who I
asked to get an interpreter for me, but then when I did that they said: “well wait a minute, what insurance
do you have, well we don't accept that insurance.” I saw many different providers doing this to me…. I
think it’s often the case that they just don't want to have to provide interpreting services.”
“
From a participant who is gay:
“The problem I’ve had with doctors is I find they don’t take side effects seriously from medication and I
believe I’ve been caused health problems by some of these side effects. Some have increased my appetite
where I gained a lot of weight. I’ve got diabetes. I’ve been in pain for two years, really horrible pain. I
just discovered that it was caused by medication and none of these doctors knew. When I just stopped
taking one of my blood pressure medications, the pain went away… A lot of doctors, they do not take the
side effects seriously. They don’t look them up.”
From a participant who identified as being lesbian:
“I don’t think they [doctors] know how much it hurts to be told or admonished that you’re not using birth
control – they’re supposed to be doctors….. Then to basically be told, like I remember some things like
“don’t you remember all the pain you had [as a child] and why would you ever [have children]? Why
would you take the risk?” Because there’s genetically a 50% chance [of passing the disability]. But what
they [doctors] don’t realize is you’re making it seem like I have a horrible life and I pay all my bills. I
have good relationships. I have godchildren. I don’t understand…. and it deeply, deeply hurts you and
people don’t get it…”
From a participant who is homeless:
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“When you go into ERs or even some doctors, the minute they hear that you’re homeless….they treat you
different. Their level of care just drops.”
This report was created with the generous support of the
Blue Cross Blue Shield Foundation of Massachusetts
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